Key to championing a plan is building your teams—no one should have to “go it alone.”
Forming teams of support will help ensure the caregiving plans you co-create play out as anticipated and divide support into manageable tasks for everyone involved. Teams also allow family and friends to take on different caregiving roles, contributing in ways best suited to their available time and capabilities.
Think about your caregiving teams in three different areas: the family team, the medical care team, and the support team. The same team members may serve on more than one of the teams, but they will have distinct areas of responsibility. Consider assigning tasks to each team. Your role as the champion—or chief care partner—is to partner with your loved one to coordinate the teams and focus on the big picture.
The family team is generally comprised of people who are close to you and, more importantly, your loved one—a spouse, partner, siblings, adult children, neighbors, and long-time friends. The family team plays key roles in providing support to you and your loved one on an as needed basis. Your family team will be organized to help with tasks such as transportation, outings for social & faith-based activites, companionship, support with finances, shopping, household and yard help, weekly or daily calls, and more.
When working with the family team—remember you’re the facilitator. Your goal is to make sure your loved one’s wishes are respected and that they are in charge of, and in the center of, their team. The team works on your loved one’s behalf and supports him or her – the team does not direct care. This can become especially difficult when the family team members don’t agree with one another, or with the choices being made. But this important approach will go a long way toward ensuring the happiness and independence of your loved one.
The family team approach can help prevent any one person from feeling overwhelmed by their caregiving tasks, and ensures each team member has an opportunity to meaningfully contribute, support their loved one, and clearly understand what is expected of them.
Also, a team approach allows you to include members who live at a distance, as well. For example, a daughter several states away can assist with finances by paying bills and providing financial oversight on line. Also, by having defined roles, if a team member becomes ill or is unable to fulfill his/her role for a period of time, their tasks can be covered temporarily by another team member.
Coordinating medical care is often one of the most challenging aspects of caring for a loved one. Your medical team will likely be comprised of all medical providers involved in your loved one’s care. This includes physicians and specialists, nurses, physical therapists, mental health professionals, pharmacists, direct care staff, insurance providers, case managers, in-home providers and more. Fortunately, much can be done via email, over the phone or with the help of a paid care coordinator.
As a champion of this team, your role is to make sure the team communicates regularly, works toward the same goal, shares the same information, is aware of physical, mental health or medication changes, or other health transitions. This includes episodes of depression that may impact your loved one’s overall health, loss of a friend or family member, recent falls or hospitalizations, changes in sleeping patterns, etc.
At some point it may be helpful for you or another family team member to become more involved in health care by escorting your loved one to important medical appointments. This provides an additional opportunity to work together and advocate for the best health outcomes.
While it may be difficult for some people to share medical information with others, it can be very helpful to have another pair of ears in the room, to reinforce doctor or practitioner’s recommendations, or to make sure your questions get answered. Medical professionals may spend more time with those who are escorted by an advocate, and provide more thorough explanations of diagnoses, treatment options, next steps, and more.
Prepare to talk to the doctor. Here are instructions on how to make the most of your doctor visit.
As a caregiver, you also need to have a personal support team.
These are the people to help you care for yourself while you care for your loved one, to remember you can’t do everything on your own, and to make sure you care for yourself. After all – if something happens to you, who will care for your loved one?
Your support team can be made up of family members, friends, a personal coach or therapist, your physician, and people who play a regular part in your life. When you identify primary members of your support team, let them know you’re helping to care for someone and describe what that means and looks like to you. Explain aspects of caregiving that are most difficult for you, and that you’d like to rely on them to make sure you take care of yourself, too. Caregiving can be especially challenging for someone who also experiences a role change from adult child to caregiver, or spouse to caregiver.
Think PPF: ask your support team to be Patient, Positive and Flexible and have them encourage the same in you.
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